Sunday, August 21, 2011

There's no place like home

I remember when we brought Jayci home from the hospital (almost 3 years ago now) thinking they couldn't be seriously letting us bring this baby home and trusting us to take care of her without some further training or something . . . Multiply that feeling by about a million, and that's how I felt yesterday when we got to bring Caden home.

I know they wouldn't let us come home from the hospital if he wasn't ready - but without his monitors and such, I've been a hot mess worrying about him. I'm trying to go about my normal life with a "normal" newborn, trusting the Lord and trusting myself. I mean, I have to stand on the truth that God would NOT have made me Caden's momma if He hadn't also equipped me to take care of him. I need to stop letting my insecurities rule me, and instead rest in the same trust and peace that enveloped me when we were in the hospital.


 Daddy taking good care of his baby boy . . .
I thought I was scared to give Jayci a bath for the first time . . . That was nothing compared to this. I was too panicked to even pick up my camera during the actual bath, so you just get a few shots of our little sweetie after his bath. Poor thing has so much tape gunk all over him from all his IVs and such, I dont know how we will ever get it all off.

Ready for bed!
The obvious question for us is "now what?" What does life look like now that Caden's home?

Well first of all, we have to try and walk the delicate line between allowing ourselves to be excited and rejoice over the miraculous things Jesus has done in our son's heart, and also recognize that we still have a long road ahead of us.

Caden has three doctor's appointments in the next two weeks, and he will have continual follow up and monitoring to see if he needs another surgery. We would still love for everyone to be praying for that left ventricle to remodel, because another surgery just seems like it would do us all in right now . . .

He came home on a feeding tube and several medications. And, quite honestly, the feeding schedule is grueling. I am not complaining and I couldn't be happier that we get the joy of feeding him ourselves at home, and that he has come so far already . . . but it takes an hour and a half every three hours to feed him through his feeding tube, and somewhere in there I have to pump too. So basically we have no hope of sleeping for more than an hour at a time. I'm not sure how we're going to survive once Jayci comes back from nana's house this afternoon . . . At the beginning of each feeding we have to try for 20 minutes or so to give him a bottle. He has to relearn how to suck and swallow and do all the things that normally come instinctually to a newborn, because for so long he received his nutrition through an iv, was paralyzed, etc.

We would love for you to keep Caden in your prayers. That he would adjust to being home, that his heart would be strong and continue to heal so he wouldn't need more surgery. For his bone to heal (they cut his sternum for the surgery and it takes 6-8 weeks to heal), and for there to be no infection in his incision. Please also pray for us that we will figure out how to juggle his feeding and medication schedule and get some rest ourselves. And for Jayci coming home - for her to adjust well, for her to understand that she HAS to be gentle with her brother, and for us to have wisdom in handling both of them together.

We are so thankful for the amazing things God has done. And for the people He has brought to carry us and support us through the last two weeks, as well as the next months and years as we navigate being Caden's mommy and daddy.

26 comments:

  1. My thoughts and prayers are with you guys. So glad his surgery went well and you are taking him home

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  2. welcome home! what a day to celebrate!!

    hold fast to those truths and promises. yes, it is a lot to figure out and juggle, but you'll get there. then, in two years, you'll find an old feeding/medicine schedule and say "was that really our life?!" :)

    best wishes as you learn to live life as a family of four!

    ps - check with CHoA for some adhesive remover. ours was an orange liquid in a 2-3 ounce bottle, but i've also seen them in wipe form. it works WONDERS to get all of that tape gunk off of their skin.

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  3. I know you are happy to be in your OWN home! Still praying for all of you as everyone gets adjusted to life at home. Caden is such a handsome little guy and looks so much like Jayci! Enjoy your family of 4:)

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  4. Oh! So happy he is home. Praying for your grueling schedule. Praying for adjustments and happiness and recovery. Praying and praying. Without ceasing. Love you!

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  5. welcome home! prayers for you all...SO glad to see that baby caden is able to be home with his family :)

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  6. Praying for your new normal ... and for the "delivery room" grace God will provide you for each new hurdle! Claiming the promise that "the ONE who calls you in faithful and HE will do it!" (I Thes 5:24) God WILL provide what He has called you to be and do! Love you guys!

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  7. He looks SO good! I mean, what a cutie already! We're still praying (as are many of our friends and family) and also celebrating with you that you're all home! P.S. You could try a little extra virgin olive oil to help remove the sticky stuff from all the tape, that or maybe some cocount oil. Both are good for the skin...yes, even that precious baby skin. :)

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  8. Praying for peace, and confidence for you guys that you can do this! Look into some adhesive remover wipes. I'm in nursing school and they are WONDERFUL at taking tape residue and all the other gunk off without pulling at the skin, I bet your doctor's office would have some :)

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  9. Welcome home sweet little boy!

    I have been praying for your family since the day before Caden's surgery and my heart has been very heavy for you, but it has been so miraculous watching God work in Caden's life as well as yours.

    We were at church this morning and I saw Jayci with her grandpa (I'm assuming). Just another reminder to say a big prayer for your family.

    Isaiah 46:4b - "I have made you and I will carry you; I will sustain you and I will rescue you."

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  10. These pictures and the ones from the hospital are amazing! I feel like I've already seen Caden in person!

    Thanks for sharing your heart and all of your concerns as you walk thru having him home. I will be praying for all of your requests, but especially for sleep. It's hard to have energy for the long haul without rest!

    Blessings to you and your sweet family!

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  11. I was in your shoes to some degree about 4 months ago. My son was born 5 weeks early with a moderately large VSD. We left the hospital after he was in the NICU for a little over 3 weeks. We too had to juggle the feeding tube, bottle feed, pumping and cleaning all the equipment. Surgery still may be in our future, so I may contact you about that. But if you want to talk to someone who has recently dealt with the ng tube and a heart condition, please email me, mnisbet815@yahoo.com.
    Praying for your family.

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  12. I'm SO glad he's home!!! I wanted you to know that I awarded you with the Versatile Blogger Award on our blog so that hopefully more and more people can read about what God has done in y'alls lives, and hopefully donate to your ministry. I know this is not a time where you want to think about following the steps for "receiving" the award, so just ignore the post... just hoping I can spread the word about your family. We love y'all and are praying you!
    http://notesfromthenelsens.blogspot.com/2011/08/versatile-blogger-award-7-facts-about.html

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  13. Ever since I heard about Caden I have not been able to stop praying for him or your family. I know God has performed a miracle already and also know that He will perform anoher one to completely heal Caden. I am so glad that you are all home, what a blessing! I am praying for you and Adam to have strength, peace, wisdom, guidance, comfort, and to get rest. I pray for Jaci to just know that she has a brother who needs tender love. Seeing the pictures of them in the hospital were absolutely precious and shows that she will be an amazing big sister! I know the unknowns are a bit scary, but know that God had you and Adam be Caden's parents for a reason. He knows you both are the right ones bc of you love, compassion, strength, and faithfullness in Him. Hold onto those moments where you felt strong in the hospital and know that they will happen at home too! I am praying for you all and know that God will answer your prayers, hear your cries, and will answer the desires of your heart. Blessings!

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  14. Praying for you and your entire family! I am amazed that you guys were able to go home! GOD IS SO GOOD!

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  15. I remember bringing Iris home and feeling a foreign mixture of indescribable joy and relief along with trying fiercely to get our equilibrium. I'm not sure if it wasn't made a little harder in that, like you, we had a typical baby-going-home-process with our older son.

    I continue to pray that your sleep and patience and daily routines adjust as you need them to. And, of course, that Caden's heart continues to heal in such a way that negates a future surgery.

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  16. Welcome home! Great news and Im sure a little scary also. Will continue to keep y'all in our prayers.

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  17. The strange thing I found about being home was that I could still hear the beeping of the machines in my head for days and days.
    The healing of the sterum was very annoying b/c we couldn't pick Benjamin up under his arms for two whole MONTHS. (He was 5 months at surgery, so it was hard to continue to cradle-hold him!)
    I know it is hard to believe, but one day you will look back and read these posts and remember all you went through, and it will seem like a different lifetime. My son had his open-heart surgery three years ago this October, and I can't believe how far we've come since then.

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  18. So happy you are all home! I will continue to pray for you.

    P.S. Not sure if someone else mentioned it, but baby oil and a little cotton swab work wonders with adhesive glue removal.

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  19. I am so happy you were able to take him home! He really looks great, what a beautiful little boy. I will continue to pray for all of you, I know I would be a nervous wreck as well, but I think things will fall into place quickly for all of you.

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  20. Heavenly Father, please take care of this family. Protect them and give them your strength. Let them experience your presence abundantly in there home. Care for Caden, and give them wisdom in raising him into the man You have called him to be. In the Mighty name of Jesus...Amen.

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  21. The feeding schedules are grueling. We did it and it was awful. Our saving grace was our pediatrician writing us a prescription for a feeding pump to do continuous feeds overnight. Check and see if you guys can get one for Caden and if your insurance company will pay for you to rent one. It will help tremendously!! We ended up having to use it during the days for Logan's feeds because they took so long...an hour and a half too. He couldn't tolerate the faster bolus feeds. We actually had the feeding pump for two years. Best thing ever.

    Will be praying fro all of you to get some much needed rest, for his heart function to improve so surgery is not needed sooner and for his continued healing now that he is home.

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  22. Continuing to pray for strength and wisdom as this journey moves to your home!

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  23. I'm so glad you were able to bring your little boy home! Although scary, it must be a wonderful feeling to have your whole family under one roof. I hope he continues to have a speedy and uncomplicated recovery.

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  24. So glad your sweet baby Caden is home with yall! I am praying for continued healing from him. God is soo good!

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  25. Becca - I just asked a woman who has an amazing ministry in Israel to be praying for Cayden. Her name is Christine Darg (You may want to "google" her name some time.) I posted my FB post to her, below. Your faith and trust in our Heavenly Father touches me deeply. How precious all 4 of you are to Him.
    Margaret Collins via Laura Naile
    Christine - I've been so, so, so touched and excited reading all your various posts. I am thrilled our Lord has you where you are, speaking His Truth in love and boldness. Now I'm asking you to please pray for this precious baby and his parents who are very devoted believers and involved in our Lord's work in the inner city of Atlanta, GA. I don't know them and they don't me from Adam's House Cat. But that's okay. We are all family, nevertheless.

    The Stanley Clan: There's no place like home
    thestanleyclan.blogspot.com
    welcome home! what a day to celebrate!!hold fast to those truths and promises. yes, it is a lot to figure out and juggle, but you'll get there. then, in two years, you'll find an old feeding/medicine schedule and say "was that really our life?!" :)best wishes as you learn to live life as a family...
    20 seconds ago · Privacy: · Like · · Share

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